“Hi Mrs. Braucher this is the school nurse, Garrett is complaining of a stomach ache, can you come pick him up?”
For weeks, this exact phone dialogue was on repeat. After the first couple phone calls, as any “good mama” would, I picked him up and kept my eye on him throughout the afternoon. It’s amazing how fast kids can recover from a stomach ache once they’re home watching TV and requesting snacks, am I right?
But as any “smart mama” would (this is where I would insert the sarcastic laughing emoji) I could see through the facade. As consistent as the “stomach aches” became, the one consistent truth that remained- Garrett wanted out.
School has never been easy. In fact, if I could homeschool him (and I have tried twice now) I would. Ever since Pre-K, while Garrett was physically in school, we would receive a phone call for one reason or another, and when we picked him up- we would receive the dreaded “report.” Failure to stay in his seat, failure to follow directions, failure to keep his hands to himself, failure to wait his turn, speaks out of turn and the list goes on and on. Most littles one struggle with these same issues when they are learning to attend school. I would tell myself and others would tell me as well, “He’s just a boy being a boy, “He’ll grow out of it.”
When the same issues stick around grade after grade, and the reports evolve, any “smart mom” would begin to wonder, right? The reports got a bit more interesting though…
“Mrs. Braucher, Garrett cut his classmates hair.”
“Mrs. Braucher, Garrett peed in the grass during recess.”
“Mrs. Braucher, Garrett won’t stop kissing the girls.”
“Mrs. Braucher, does Garrett have a lunch account? He continues to get school lunches and claims they can ‘put it on his tab.'”
And over the years the phone calls started to get more impressive….
“Mrs. Braucher, Garrett has a lady bug stuck in his ear.”
“Mrs. Braucher, Garrett says that he was stung by a bee, a wasp, and a hornet simultaneously.”
This sweet boy of ours makes me laugh and smile greater than I ever could have imagined, yet at the same time makes me want to shout his name like the names Alvin the Chipmunk and Dennis the Menace have been shouted before.
There was one phone call in particular though that required some intervention. The day the school nurse called and said, “Mrs. Braucher, Garrett said that he has a dairy allergy and that he had chocolate milk for lunch and he needs to see a doctor immediately.”
If you have a child like Garrett, a witty, clever, brilliant child that can manipulate like the best of them, never let them know things you are not certain of yourself. They may just use it as ammunition.
We had speculated a possible gluten and dairy sensitivity over the years. But we didn’t know for certain. In fact, we had removed dairy from my diet as a nursing mother, and gluten from his diet twice already. I also was not a stranger to the notion that these “food allergies” can be deemed the culprit cause of ADHD, Autism, Sensory Processing Disorder and the like. But we were also in the midst of discerning if Garrett was battling an anxiety disorder along with his ADHD. He was already taking ADHD medicine and I hesitated to place him on a second medicine, so navigating the root cause of these “stomach aches” as potentially a food allergy was the next step.
Unfortunately, the pediatrician required bloodwork in order to confirm this theory. For me personally, I will consider everything, and will pray and discern what I feel the Lord is leading me to do for my children. Somewhat easy for me to say, however getting THE CHILD in question [with anxiety] to get bloodwork done is a whole other basket.
See, for Garrett, over the past couple of years we discovered it is necessary to make “field trips” to certain doctor’s appointments. This is our best chance at success. And success in this case equals “going through with” the appointment and not say, exiting the building and running down the street. Which HAS happened. Thus, our hope is by the 2nd visit, he will go through with the appointment. So we had our “field trip” for the blood work and surprisingly it went well!
So, when Garrett told the nurse that he ingested dairy and it was time to see the doctor, I decided to capitalize on his request and took him straight from school to the lab. Always better when he thinks it’s HIS idea.
I wish I could say our “field trip” prepared us for victory. But ultimately, what happened during the bloodwork was not a complete surprise. I think deep down I knew it would happen, but I was so hopeful. Maybe that’s why it hurt so much when it happened the way it did. Garrett was able to get through the check-in process, the waiting room, and sitting in the lab chair. They even were able to demonstrate tying the band around his arm to locate a vein. Once the blood work process began, that’s when the fight kicked in. He screamed, lashed out, head-butt and bit. He did anything to anyone out of defense.
I know that these reactions are not isolated to a child with special needs. Getting a shot or blood work can be scary and painful for any child, and even adult! But I think the difference is, when it was over, no hug or embrace, no sticker, lolly-pop or words of encouragement was going to help him recover. The anxiety, the pain, the adrenaline and the inability to self-regulate took over and he continued to physically and verbally take it out on me. I knew his fear and anxiety had turned to anger, and I was the scapegoat. I could see that his nurses were in shock (even though I gave them forewarning) and one of them even began to yell at him. I could see that they wanted to teach him a lesson and protect me. And I appreciated their concern. trust me, I do not condone this behavior. But knowing what I know about him and the needs that he has, this was all so much more than a boy being disrespectful. And this was not the first time I was the recipient of this verbal backlash. Hence, why we take these “field trips” or “practice runs.” But regardless, no level of prior experience, or special needs education and comprehension can remove the pain I felt. It took everything I had to get both of us out of that building.
Once we made it outside, he refused to get into the car and hid behind a column for about 10 minutes. I let him while I just cried. As hurt as I was, I could only imagine all of the emotions he was battling. I could see it on his face. Fear, anger, shame, confusion. FIGHT AND FLIGHT at it’s finest. When we got into the car, we both cried for a solid 15 minutes. It was one of the first times that I experienced his geniuine remorse. Even though, about an hour later he was fine. I saw remorse nonetheless. Something that most of the time, he had lacked and brought us concern. He even asked me if he could keep the bandage on his arm and wear it at school to show his classmates of his bravery.
Part of me wanted him to do so. He needed to be able to celebrate victories if he was going to be able to do it again! But I kept battling the question, was it really a victory? He seemed to feel so. But I wasn’t fine. I was grieving.
I still am.
In fact, I am not just grieving the struggle and heartache that can come with some of these experiences of being a parent of a child with special needs. I am battling shame and loneliness as well.
See, I actually wrote everything that you have just read in this blog post, over 3 months ago.
This particular doctor’s visit happened in June of 2021.
Today is October 4, 2021.
I tried to sit down several times in the past few months in an attempt to finish this blog.
Then I settled on the idea of writing something unrelated to special needs because I have felt so broken and messy in this part of my life. I doubted that I had the wisdom or right to write on such a topic.
Navigating the topic or the life with a “special needs child” or a child with “extra needs” or a child with “more” can feel so overwhelming. I have one son with an obvious need. He now has 2 cochlear implants and is progressing amazingly in his therapy and at his special school for children with hearing loss. I am so grateful for all the growth and celebration we have experienced this past year with and for Jackson.
But my sweet Garrett. My incredibly bright, witty, charismatic, Garrett has struggles that are not as visible and can often be mistaken for bad behaviors and bad parenting. We have have watched him grow from this adorable curly haired 4 year old boy with the greatest “Garrett-ism’s” and no fear/no filter personality, to a now 8 year old boy with the same quirks, but the fearlessness has more clearly presented itself as a struggle with impulsivity, and the “no filter” has brought on concerns of autism spectrum disorder.
We have been through so many evaluations, received a new diagnosis every year, have trial and error-ed our way through prescription medicines and dietary changes. We have struggled with shame, frustration, failure, and loneliness in this arena. And when I say we, I mean all of us. Not just us parents, but his siblings, and he himself have struggled with the impact that a social/mental/learning disorder can have on all facets of life.
It is so easy to misunderstood and it can be quite isolating when all most people see is the ” behaviors” that your child exhibits without the full understanding of where they come from. It can feel hurtful when instead of validation, as a parent you are offered correction after correction with a pinch of judgement and a splash of failure. And so for me- It can also be tempting to think- “I’ll wait until we get through this season, or until we have the next evaluation, or until we make headway in therapy or until I have it all figured out before I even consider that I have anything worth sharing with the world.”
If I continue to “wait until”, I will be waiting forever.
So today I will write.
Not for the mere purpose of “airing my dirty laundry” or to drop a “Dear Diary, I had the worst day ever” type of post into the google-sphere. But because I feel compelled to share about my journey with anxiety and with parenting children with extra needs. Back in June, I was not finished processing my experience and emotions from that particular doctor’s visit. I even struggled with this nagging voice in my ear that was telling me I have no right or authority to share on the topic of parenting children with special needs. A condemning voice whispering that I have no right at all to share about life’s trials because “it could always be worse.” Maybe that voice was the enemy, intending to prevent me from being transparent with others. Because sometimes the greatest encouragement can be simply reading someone elses’ words and connecting with them, realizing you are not alone. But the enemy wants us to feel alone. He wants us to always doubt God’s presence or goodness. So he capitalizes on our struggles and whispers lies to keep us held down by the weight of our pain.
I also hesitated to share my experience because I respect the fact that I am sharing about a real person, who one day will be an adult himself. One day in the future, if he reads these stories, I want him to ultimately see how “human” I am, how very much I love him and will never stop, and how very big our God is.
So today, in the middle of the mess, in the thick of the dysfunction, in the heat of the troubles-I am going to write to remember.
I am writing to remember that life has been messy and hard, but never once has God been absent. I want to infuse it in my brain. I want my children to know it. I want other moms to believe it and to take inventory on their past experiences with a new set of glasses. Not the rose-colored ones, but not the tinted ones either.
When I draw near to Christ, I have eyes to see and ears to hear. I am able to look back and see how he has prepared me for such a time as this.
I look back on the day that we received the news that Jackson has Usher’s Syndrome. I reflect on the various diagnoses that Garrett has collected over the years. And I continue to process the recent news that all of his challenges explain how he too, like so many amazing children before him, hold a special place on the Autism Spectrum. I remember all of the feelings. I still experience them now. Sadness, pain, worry, confusion, anxiety, guilt, grief. Some days can be so heavy with life’s challenges that it feels like you just have to keep putting one foot in front of the other to keep going. It can feel like if you stop moving, the waves will overcome you.
But I have committed with my heart to remember that with Jesus, they won’t. With Jesus, the waves may keep coming, but HE is still greater than the waves.
With Jesus, I continue to be guided towards relationship with HIM and to prioritize self-care. You see, God chose me to be the mama for these kids. I may have to remind myself every day, but He did. And he did not choose me without promising to equip me. By the power of His word and the power of the Holy Spirit guiding me into specific friendships, specific doctors and therapists, special grants and scholarships, I continue to keep going.
He will never leave me or forsake me. This is true for Garrett, Jackson, Gracelyn and Adam.
This is true for all of God’s children.
This is true for you mama.
You are not alone. You were chosen to be his mom or her mom.
God WILL carry you and strengthen you, and be the parent when you are bone-dry.
His promises are forever.
“For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.” Psalm 139:13-14